Just curious... has anyone heard of , been a part of an actual "group" similar to Alcohol Anonymous where people actually meet to support one another on their journey with Anti depressant or Benzo "addiction" or withdrawal? I'm afraid the answer is no but thought I'd throw it out there anyway.

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alexjuice

alexjuice

You can go to AA though and say you've got a medical problem and a desire to stop drinking and using addictive medication. I know a benzo dependent person who attended AA for support, though he felt nothing in common with the addicts and stopped the experiment quickly. But, feel free to try it.

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Barbarannamated

Barbarannamated

The problem I see with going to AA or similar addiction groups is that our situation is completely iatrogenic, the fault of the pharmamedical establishment. I went to a detox for 3 horrid days and the blame placed upon the patients was something that has haunted me. It was anything but supportive and they did use the AA steps structure.

I refuse to become involved with anything that does not differentiate between a known addictive drug/substance and our situation. The premise should be completely different.

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Skyler

Skyler

Just curious... has anyone heard of , been a part of an actual "group" similar to Alcohol Anonymous where people actually meet to support one another on their journey with Anti depressant or Benzo "addiction" or withdrawal? I'm afraid the answer is no but thought I'd throw it out there anyway.

They also want folks to come off in one step as far as I know.. they would not support a slow taper. I saw your question in the benzo section. You are looking for support with anxiety as you come off Xanax? You might find some help in general anxiety support groups.

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Jemima

Jemima

I'm not sure that such a group would have been do-able for me or a lot of other people because of the symptoms in early withdrawal - light and noise sensitivity, insomnia, et cetera. I was just not inclined to go out in public any more than necessary to get essentials. Sitting at the computer, often reading for hours and occasionally posting was about all I could handle in the first three to four months of withdrawal.

Medically speaking, the withdrawal symptoms from antidepressants and other prescription drugs may have similarities to withdrawal from illegal drugs and alcohol, but I think the resemblance ends there. The reasons people end up in these two types of withdrawal are very different and I don't think the twelve-step approach would be very useful in AD withdrawal. Most people have no idea what they're getting into when taking prescription drugs, whereas the dangers of illegal drugs and excessive drinking are well known.

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alexjuice

alexjuice

Just curious... has anyone heard of , been a part of an actual "group" similar to Alcohol Anonymous where people actually meet to support one another on their journey with Anti depressant or Benzo "addiction" or withdrawal? I'm afraid the answer is no but thought I'd throw it out there anyway.

They also want folks to come off in one step as far as I know.. they would not support a slow taper. I saw your question in the benzo section. You are looking for support with anxiety as you come off Xanax? You might find some help in general anxiety support groups.

This is true but not exactly how I experienced. You would definitely be encouraged by some to get off quickly because you are not sober until you are off.

It's a big deal to count days in AA, so you would have to always identify as being in your first 30 days even if you'd be going for months.

However, because it is AA, the only requirement is a desire to stop drinking. People come to meetings everyday and drink right after. They are always welcomed back.

I do agree that, in the sense you care about, AA would not be a supportive environment. Because the worst sin in Recovery Community is USING. There is no harm reduction, or slow taper, etc -- You are there to stop dying and start living. And for good reason, true alcoholics need to stop drinking b/c they will manipulate any other system that allows them to keep drinking/using any amount.

There are interesting support groups on meetup.com if you are in a metro area. I'd look there too. Plus craigslist.

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areyouthere

areyouthere

LOL.. check in your community. Maybe ask at the library. Often they are some variant of cognitive behavioral therapy.

Last time I called the resource desk at the library it was when I was trying to locate my Aunt for a family emergency. She was at her summer place and I couldn't recall the whole name of it. I knew it was in Maryland ( or MASS>?) and that it was a nudist camp and that the camp's name had the word "pine" in it. They found it for me & I got ahold of her but I was horrified for months because our local newspaper had a regular piece entitled "Most interesting requests of the resource desk at the library" . It never showed up in the paper. WHEW!!!!

And all other suggestions are great too. I predict that groups will be popping up soon. Let's make some titles to the potential "society" ...... Serious ones and funny ones.

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areyouthere

areyouthere

You all seem to be handling the anger better than I am. It is the iatrogenic nature that I need the most support with. And the irreversibility of my condition..

I am sorry if I offended you Barbarannamted. It certainly wasn't intentional. I know that I am fortunate that struggling to come to terms with what I thought was a good thing but has turned out to be a bad thing is so far just simply scary as hell and inconvenient.

I am very, very, very grateful to have found this site. I know that everything here, all of the wonderful folks who post here are suffering. When I ask about a "support" group I hope you all understand that it is sincere.

I am struck by the intelligence of of the active participants here.

I can feel the anger with the medical community here but I have little interest in a "get the pdocs" crusade. I have been on my own life -long societal crusade and I just want to get over it, feel better and move on. The pdoc crusade is not dissimilar to the one I have been fighting. It is a result of reckless experimentation with humans as if they are just another trial for a grand initiative or experiment... and unfortunately is hurting many people. My crusade is called "public education".

I am a science teacher. I have been in education in one way or another since I was 21...35 years pretty soon. There is no way that I can express to you the anger and emotion I have experienced with what has been happening in education across this country especially and mostly in the last 10 years. Caustic disgust and seething anger over the hypocrisy of a system that professes to help children when in reality is harming many has left me exhausted. It's eaten me from the inside out..yet another wound to heal. I 've always turned to humor as a way to cope. For a dysfunctional family life, suicides of friends, a half brother, murders of a student, accidental student death's, having to deal with all the **** that comes with some students and their miserable lives, an alcoholic sister who goes to AA is very active but goes on and off legal drugs like they're candy. I chose to make light of things when I can. I do have a propensity to be inappropriate at times and I am sorry if I offended anyone regarding support groups for a phenomenon that is not funny.

Sometimes when I come across a hole of hopelessness I try to fill it with humor and unfortunately, inevitably and eventually I wind up offending someone!. I don't consider this a thread jack since I am the one who started it .

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Shanti

Shanti

NA (Narcotics Anonymous) is a little different than AA. It would seem that it should be more supportive of tapering, as many in it would be trying to quit Benzos as well as illegal drugs. Benzos get just as abused on the street as any other illegal drug. Surely they must know you can't just stop taking them.

I was in an AA rehab when I was very young. I was really just binge drinking at that time. There was a lot of support and information about self improvement, how to handle anxiety and depression. However, it doesn't get too much into that in just regular meetings.

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Shanti

Shanti

You all seem to be handling the anger better than I am. It is the iatrogenic nature that I need the most support with. And the irreversibility of my condition..

I don't understand. Your condition is irreversible? I went through some serious anger about this too. I still get angry. I got very angry in a women's support group I'm in when one of my friends was getting on my case about my voicing my opinion about antidepressants. She always argues with me about it, and in so doing, caused one of our other friends (one that I am closer to actually), into starting up with Xanax and Effexor of all things! I tried to warn her, but every time I spoke up it turned into a fight with her accusing me of being dramatic. Now my friend is addicted, missed a few doses and ended up in jail after freaking out, and the DA is pressing charges. Sorry I rambled, but this is just really irking me. My efforts to warn thwarted by someone I now call an ex friend.

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Barbarannamated

Barbarannamated

You all seem to be handling the anger better than I am. It is the iatrogenic nature that I need the most support with. And the irreversibility of my condition..

I don't understand. Your condition is irreversible? I went through some serious anger about this too. I still get angry. I got very angry in a women's support group I'm in when one of my friends was getting on my case about my voicing my opinion about antidepressants. She always argues with me about it, and in so doing, caused one of our other friends (one that I am closer to actually), into starting up with Xanax and Effexor of all things! I tried to warn her, but every time I spoke up it turned into a fight with her accusing me of being dramatic. Now my friend is addicted, missed a few doses and ended up in jail after freaking out, and the DA is pressing charges. Sorry I rambled, but this is just really irking me. My efforts to warn thwarted by someone I now call an ex friend.

Shanti,

Recent MRI showed structural damage to white matter of brain that is irreversible and progressive. I cant prove that it is due to SSRIs, but labwork trail points toward Zoloft trigger ing an autoimmune response and antibodies have been attacking my brain. More info in my thread.

Areyouthere... no offense taken. My situation is extreme and I am dealing with alot of anger. My issue lies with medical community that continues to deny iatrogenic drug damage and treat it the same as addiction to known dangerous substance and often includes SS/NRIs as "treatment". The blame is placed on the patient.

Your seeking out support is very wise. My very brief experience with a 12 step program in which I was treated as equal to heroin addicts was traumatizing.

For some of us who have lost decades and careers and much of life to these drugs, it is a life purpose to educate and inform others.

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areyouthere

areyouthere

Areyouthere... no offense taken. My situation is extreme and I am dealing with alot of anger. My issue lies with medical community that continues to deny iatrogenic drug damage and treat it the same as addiction to known dangerous substance and often includes SS/NRIs as "treatment". The blame is placed on the patient.

Thank you. This is not dissimilar to let's blame the "teachers". I really do get it. Excuse my French but in both cases it really is a cluster **** with fingers being pointed in the wrong direction.

Your seeking out support is very wise.

Again. Thank you. Because of my natural tendency to withdraw socially , a coping skill I learned in childhood because expressing feelings was very much frowned upon, I am frightened that I will find myself alone again. That would make the healthy self help suggestions for coping with WD from the drugs much more difficult. At least I know it would for me. Thus.... just looking for possibilities. It has become obvious that some sort of SSRI/Benzo groups are not around yet. I am glad that I discovered this. I will have to think outside of the box. And when I get there and find something that works I will post it here.

For some of us who have lost decades and careers and much of life to these drugs, it is a life purpose to educate and inform others.

I have so much respect for this. Thank you for everything that you do.

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GardeniaBlossom

GardeniaBlossom

I tried going to an AA & an NA meeting after being off AD & a benzo for a few months. I thought I could learn how to cope with withdrawal symptoms there and that the membership would get what withdrawal was like. I went but felt very uncomfortable there. Their challenges/ issues seemed completely different. I agree that the iatrogenic aspect is at least one of the big differences. The fact that the so called "treatments" are endorsed by the medical establishment and most people accept them as not harmful is completely different from my experience on them. So many people find that view/ experience controversial. It's also hard to find people who actually get/ accept that there is a difference between addiction and dependency.

I've also looked in my area and the surrounding area (Orlando even) to find AD and/ or benzo withdrawal groups, but I couldn't find any. I might like to start one when I'm further along my healing journey and could handle organizing such a group. I don't feel I'm up to that yet, but if there are other people in my area I would be interested in getting together with them informally. I live on the Space Coast in Florida, east of Orlando.

areyouthere: "Because of my natural tendency to withdraw socially, a coping skill I learned in childhood because expressing feelings was very much frowned upon, I am frightened that I will find myself alone again. That would make the healthy self help suggestions for coping with WD from the drugs much more difficult. At least I know it would for me. Thus.... just looking for possibilities. It has become obvious that some sort of SSRI/Benzo groups are not around yet. I am glad that I discovered this. I will have to think outside of the box. And when I get there and find something that works I will post it here."

I relate to that so deeply, areyouthere. I have the same tendency for a similar reason. Thank you for articulating that.

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Prestorb

Prestorb

Hi Gardenia! I have not found such a group in the Baltimore/D.C. Metro area either - and you would think it would exist. What I have found through this site is a phone (mostly text) buddy and that has been helpful. I've also started attending an ACoA counseling group to help me deal with the neurodepression and my own tendency to withdraw and isolate. I think it's helping me understand why I tend to do this, plus I am interacting with others which I need desperately. We all need connection, withdrawal makes that close to impossible for some of us. I moved here from th Space Coast almost four years ago, still miss it terribly. Hang in there! :-)

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GardeniaBlossom

GardeniaBlossom

Yes, I need connection desperately as well, Prestorb. Congratulations on finding a text/ phone buddy here! The ACoA group sounds good, too! That's inspiring. I'm surprised to hear there is no group AD withdrawal group in the Washington DC/ Baltimore area.

I wonder if there are many of us going through this alone, and we just don't know where the others are. Finding people to interact with during this time has been extremely challenging. I am so relieved to have found this space! So far, being here feels really good.

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oskcajga

oskcajga

I dont know of any. The problem I see with going to AA or similar addiction groups is that our situation is completely iatrogenic, the fault of the pharmamedical establishment. I went to a detox for 3 horrid days and the blame placed upon the patients was something that has haunted me. It was anything but supportive and they did use the AA steps structure. I refuse to become involved with anything that does not differentiate between a known addictive drug/substance and our situation. The premise should be completely different.

I went to AA for a while and it really made me realize just how bad our situation really is. I remember meeting this one guy who was so heavily addicted to crack and heroin that he ended up homeless across the Border near El Paso texas, doing odd jobs for the mexican cartel. This guy was on the streets in mexico doing hardcore crack and heroine for like 6 months - and then when I saw him it had been something like 6 months since he got sober.

In those 6 months he was basically fully functional again, and able to hold down a job, smile make jokes, amke good shares in the meetings etc.

I've met at least 10 other people in a similar situation as well. And then there's the alcoholics, who can go from drinking like a barrel of wine every night for 30 years and fully recover within 6-12 months.

Meanwhile, here I am taking 20mg of cymbalta for 5 months, completely brain dead, so badly depersonalized and nerve damaged that I have been disabled for over 2 years with no end in sight.

So by being responsible patients, we've ended up in worse condition than hardcore homeless heroin junkies.

I listed to like 1000 people share their stories over that one year period or so, and I only met one person who had it as bad as me - and ironically, he had taken tricyclic antidepressants and antipsycotics with alcohol - it took him about 2 years to recover.

So from my experience going to AA - I can say with 100% confidence that taking antidepressants and benzos is like 1000% worse than doing most other recreational drugs that are out there - and has a MUCH MUCH slower recovery rate.

You NEVER hear a drug addict complaining about symptoms 2 years after stopping - never. Ever. They're talking about how to handle their emotions, keep their jobs, handle family etc, but I never heard anyone talk about the long term disabling symptoms of long term hardcore drug abuse (and yes, many many people were hardcore drug addicts and have fully recovered within a 3-9 month period).

Talk about a depressing comparison.

That being said, I did find it extremely helpful to go to these meetings. People are really nice, and just sort of looked at me funny because I was struggling so bad with akathesia. Two nice people gave me a place to stay for a couple of months when I had trouble finding an apartment - but only one or two people out of the approximately 150 people I met had any idea of what I was going through - and I had it like twice as bad as they ever did.

I'm technically like 18 months sober, so I could go to those meetings and attend - but I just don't find them very helpful and often get discouraged because I have such a hard time making conversation because the SSRI symptoms I have are so incredibly disabling.

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Wildflower0214

Wildflower0214

I dont know of any. The problem I see with going to AA or similar addiction groups is that our situation is completely iatrogenic, the fault of the pharmamedical establishment. I went to a detox for 3 horrid days and the blame placed upon the patients was something that has haunted me. It was anything but supportive and they did use the AA steps structure. I refuse to become involved with anything that does not differentiate between a known addictive drug/substance and our situation. The premise should be completely different.

I went to AA for a while and it really made me realize just how bad our situation really is. I remember meeting this one guy who was so heavily addicted to crack and heroin that he ended up homeless across the Border near El Paso texas, doing odd jobs for the mexican cartel. This guy was on the streets in mexico doing hardcore crack and heroine for like 6 months - and then when I saw him it had been something like 6 months since he got sober.

In those 6 months he was basically fully functional again, and able to hold down a job, smile make jokes, amke good shares in the meetings etc.

I've met at least 10 other people in a similar situation as well. And then there's the alcoholics, who can go from drinking like a barrel of wine every night for 30 years and fully recover within 6-12 months.

Meanwhile, here I am taking 20mg of cymbalta for 5 months, completely brain dead, so badly depersonalized and nerve damaged that I have been disabled for over 2 years with no end in sight.

So by being responsible patients, we've ended up in worse condition than hardcore homeless heroin junkies.

I listed to like 1000 people share their stories over that one year period or so, and I only met one person who had it as bad as me - and ironically, he had taken tricyclic antidepressants and antipsycotics with alcohol - it took him about 2 years to recover.

So from my experience going to AA - I can say with 100% confidence that taking antidepressants and benzos is like 1000% worse than doing most other recreational drugs that are out there - and has a MUCH MUCH slower recovery rate.

You NEVER hear a drug addict complaining about symptoms 2 years after stopping - never. Ever. They're talking about how to handle their emotions, keep their jobs, handle family etc, but I never heard anyone talk about the long term disabling symptoms of long term hardcore drug abuse (and yes, many many people were hardcore drug addicts and have fully recovered within a 3-9 month period).

Talk about a depressing comparison.

That being said, I did find it extremely helpful to go to these meetings. People are really nice, and just sort of looked at me funny because I was struggling so bad with akathesia. Two nice people gave me a place to stay for a couple of months when I had trouble finding an apartment - but only one or two people out of the approximately 150 people I met had any idea of what I was going through - and I had it like twice as bad as they ever did.

I'm technically like 18 months sober, so I could go to those meetings and attend - but I just don't find them very helpful and often get discouraged because I have such a hard time making conversation because the SSRI symptoms I have are so incredibly disabling.

I have noticed this very same thing. During my years in social-work, I have seen so many people come off of everything under the sun. I have never seen anyone end up as disabled as most of us are.

I also tried to go to AA and it just didn't work out well. The nature of what has happened to me is so much different than what they have experienced. Also, as someone mentioned earlier, they don't seem to be able to distinguish between addiction and dependence. I also didn't care for the ideology at all. I don't believe thinking of myself as "powerless" is helpful in any way.

I actually came away from those meetings feeling pretty resentful that I had been so damaged by something legal that was prescribed by a doctor. Yet, some of these people had abused their bodies for decades in multiple ways and were fully recovered in under a year.

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oskcajga

oskcajga

I dont know of any. The problem I see with going to AA or similar addiction groups is that our situation is completely iatrogenic, the fault of the pharmamedical establishment. I went to a detox for 3 horrid days and the blame placed upon the patients was something that has haunted me. It was anything but supportive and they did use the AA steps structure. I refuse to become involved with anything that does not differentiate between a known addictive drug/substance and our situation. The premise should be completely different.

I went to AA for a while and it really made me realize just how bad our situation really is. I remember meeting this one guy who was so heavily addicted to crack and heroin that he ended up homeless across the Border near El Paso texas, doing odd jobs for the mexican cartel. This guy was on the streets in mexico doing hardcore crack and heroine for like 6 months - and then when I saw him it had been something like 6 months since he got sober.

In those 6 months he was basically fully functional again, and able to hold down a job, smile make jokes, amke good shares in the meetings etc.

I've met at least 10 other people in a similar situation as well. And then there's the alcoholics, who can go from drinking like a barrel of wine every night for 30 years and fully recover within 6-12 months.

Meanwhile, here I am taking 20mg of cymbalta for 5 months, completely brain dead, so badly depersonalized and nerve damaged that I have been disabled for over 2 years with no end in sight.

So by being responsible patients, we've ended up in worse condition than hardcore homeless heroin junkies.

I listed to like 1000 people share their stories over that one year period or so, and I only met one person who had it as bad as me - and ironically, he had taken tricyclic antidepressants and antipsycotics with alcohol - it took him about 2 years to recover.

So from my experience going to AA - I can say with 100% confidence that taking antidepressants and benzos is like 1000% worse than doing most other recreational drugs that are out there - and has a MUCH MUCH slower recovery rate.

You NEVER hear a drug addict complaining about symptoms 2 years after stopping - never. Ever. They're talking about how to handle their emotions, keep their jobs, handle family etc, but I never heard anyone talk about the long term disabling symptoms of long term hardcore drug abuse (and yes, many many people were hardcore drug addicts and have fully recovered within a 3-9 month period).

Talk about a depressing comparison.

That being said, I did find it extremely helpful to go to these meetings. People are really nice, and just sort of looked at me funny because I was struggling so bad with akathesia. Two nice people gave me a place to stay for a couple of months when I had trouble finding an apartment - but only one or two people out of the approximately 150 people I met had any idea of what I was going through - and I had it like twice as bad as they ever did.

I'm technically like 18 months sober, so I could go to those meetings and attend - but I just don't find them very helpful and often get discouraged because I have such a hard time making conversation because the SSRI symptoms I have are so incredibly disabling.

I have noticed this very same thing. During my years in social-work, I have seen so many people come off of everything under the sun. I have never seen anyone end up as disabled as most of us are.

I also tried to go to AA and it just didn't work out well. The nature of what has happened to me is so much different than what they have experienced. Also, as someone mentioned earlier, they don't seem to be able to distinguish between addiction and dependence. I also didn't care for the ideology at all. I don't believe thinking of myself as "powerless" is helpful in any way.

I actually came away from those meetings feeling pretty resentful that I had been so damaged by something legal that was prescribed by a doctor. Yet, some of these people had abused their bodies for decades in multiple ways and were fully recovered in under a year.

I can totally understand how you feel and feel a similar way myself. I really appreciate your post.

On another note:

How does one go about starting a withdrawal support group?

1. how do we advertise this to the public?

2. How do we prevent ourselves from being sued into poverty or shut down by big pharma?

3. Where do you meet?

4. What kind of rules do we establish?

I think there's potentially a niche for starting withdrawals/adverse reaction support groups - but I simply don't know how to go about it.

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Altostrata

Altostrata

I ran a face-to-face peer support group in San Francisco for a couple of years.

IN RETROSPECT:

- The location was in San Francisco's down-and-out district (now being gentrified). Some of the group regulars were "in the system", on antipsychotics, and probably not going to be able to go off because Social Services was watching them.

- People would come to the group for basic tapering information, each person having their own specific needs. If I was going to do this over again, I would give tapering info in a general lecture format, with handouts, and hold support groups for people who are already involved with tapering.

- As each person's situation was very different, discussion of this within the group tended to slow things down for the others.

- People don't know how to behave in a peer support group, it's good to have a core of veterans to show the newbies the ropes.

- People wanted a Web site for more information (this site did not exist back then).

- There are lot of people looking for help going off psychiatric drugs.

This is from a thread I had started on Paxilprogress (all my posts had been deleted prior to Paxilprogress's closing in December 2014), with a few updates I just added:

We are forming a peer support group for people experiencing withdrawal symptoms from antidepressants such as Paxil, Effexor, and Zoloft. This can happen while you are tapering off a medication or after you have stopped taking it.

The peer support group will practice non-drug alternatives to control anxiety and help each other cope with symptoms. We do not provide medical advice, diagnosis, or treatment.

The group will take place Monday or Tuesday evenings very close to the Civic Center BART stop in downtown San Francisco. There is no charge for participation.

This group is held under the sponsorship of a county-funded non-profit mental health clinic in operation more than 15 years. The group and clinic have no affiliation whatsoever with any religious or quasi-religious organization.

If you are interested, please send mail to the address above. We will contact you soon to confirm date, place, and time. All responses are confidential.

===============

altostrata 12-18-2006 07:09 PMRe: Peer support group starting in San Francisco

If you can think of any good places to post the announcement in my initial post, please feel free to do so. Remember, replies go to [deleted]@[deleted].net, a special mailbox I set up.

Thanks, everybody.===============

altostrata 12-18-2006 09:43 PMRe: Peer support group starting in San Francisco

Well, that would be an honor, but what I was thinking of is if you belong to any other online groups or sites where members might be interested, please post the announcement there.

I'm going to have to do a mass media kind of promotion, since I don't know where San Franciscans with discontinuation syndrome may be reading.

I'll probably take out ads in the local papers after the holidays. But free publicity on the Web can't hurt!

[i never did take out ads -- they were too expensive.]

===============

altostrata 12-19-2006 06:31 PMRe: Peer support group starting in San Francisco

FIVE people have responded to my postings on craigslist and a couple of other places, like www.dr-bob.org and healthyplace.com forums. (I think the craigslist postings are the most effective.)

I believe we'll have our first meeting the second week of January.

I can use your help -- please post the announcement in the initial post in any forums you visit where it would be appropriate.

===============

altostrata 12-21-2006 10:22 PMRe: Peer support group starting in San Francisco

Developments:

I have discovered I can put a localized ad on Google for very little money, I believe it's $5.00 to start. Then I would have to pay about $.08 per click on my ad.

It would be shown to people who have IP addresses (that's an Internet identifier) in the San Francisco area who are searching on key words that I would select, such as "Paxil withdrawal."

Google IS amazing. I had no idea they could do something as focussed as this.

I talked to my sponsor at the mental health clinic today and we're going to meet on Wednesday to finalize plans. I hope that includes committing to a date for the first meeting, which I could be as soon as the second Tuesday in January.

He said I can collect donations to pay for advertising. He's going to rent the room to me for $1.00 per year. He also wants me to participate in a conference for non-governmental mental health services providers in the spring.

I've written up a disclaimer statement for participants to sign so we can't get sued and some vitamin and supplement info sheets as handouts. The disclaimer statement includes an option to give permission to participate in a study at a later date.

My therapist wants to come to my first group and bring her therapist-in-training, who's almost done with her PhD and is a specialist in biofeedback (!!!!).

===============

altostrata 12-28-2006 09:35 PMRe: Peer support group starting in San Francisco

Healing, your encouragement is cherished, as ever.

Met with the hosting organization again yesterday. I say hosting rather than sponsoring because our arrangement is that I am renting a room from them at $1 per year or whatever and they are not responsible in any way for what I'm doing. Fair enough.

However, the clinic director, who is quite a character and charismatic, is a great mentor. We discussed at length my incorporating as a non-profit. He suggested people would want to donate large amounts of money to my group!! I hadn't even thought of that. He told me about various money-raising techniques. I definitely can do this.

I guess I'll initially take small donations to pay for ads and supplies, etc.

Anyway, I need to get the non-profit incorporation underway. Apparently it takes over a year for the state to do the paperwork. If anyone here knows how to incorporate a non-profit in California and would be willing to donate their services, please contact me.

The clinic director needs to meet with an administrator from the city and county of San Francisco to get the okay for hosting my group. He doesn't think there will be any problem. I should get the go-ahead within a week. (He works through all the holidays.)

He gave me some pointers to fix up my disclaimer "hold harmless" statement to conform to state law. California is very picky about disclosure of medical information. The nurse made some suggestions regarding my vitamin and supplement info sheets.

They were very concerned about a form I created giving permission to be contacted for a study. I assured them I was not planning a study, but I planned to solicit medical experts for a study. What I actually said was "I'm going to shame them into doing a study."

I'm figuring on the second Tuesday in January being the first meeting.

Just got another response from my posting on craigslist. That makes 7 people who have responded to my very obscure ad. Next step after I get the go-ahead: A localized ad on Google.

===============

altostrata 01-04-2007 07:31 PMRe: Peer support group starting in San Francisco

Thanks all, the encouragement here is helping me keep going on this!

Great news -- the head of the hosting agency got the go-ahead from his supervising agency (I guess I'll get the hang of this non-governmental agency stuff). He said his supervisor said this group fits right in with their mission.

That was so reassuring because he wasn't returning my messages and I thought maybe something had gone awry. But he was just swamped.

I need to meet again with him Monday and finalize plans. Seems that because of his staffing schedule it would be more convenient for me to hold the group on Sunday afternoons, which would be fine for me.

So now I figure the first meeting will be Sunday, January 21, 3-4:30pm.

In other news, it looks like I am going to take an 8-week mindfulness-based CBT class at the local medical center on Tuesday evenings. I plan to teach whatever I learn to the people in the support group.

I am thinking I will ask for support from the group, too. The stress of this thing is getting to me, I know it isn't much but I'm still not entirely recovered and I get stressed out easily. I had a really bad relapse last week. This is truly going to be a peer support group.===============

altostrata 01-05-2007 08:27 PMRe: Peer support group starting in San Francisco

Amazing news -- I e-mailed all the addiction medicine specialists I could find in San Francisco asking if any doctors would be available to treat the members of the group. I just got this response:

[altostrata],

Dr. Smith asked me to contact you regarding medication consultations for anti-depressant withdrawal syndrome. I am helping to manage Dr. Smith and Dr. Deutschs' private practice at The Prometa Center and would be happy to speak with you.

You can reach me at 510-xxx-xxxx or at this email address. I am very interested in what you are doing. I was just talking today with someone that could benefit from your group.

I look forward to hearing from you.

Monica Deutsch

My response to this e-mail is posted below.

Drs. Smith and Deutsch originally practiced at the very alternative Haight Ashbury Free Clinic; Dr. Smith is one of the clinic's founders. They are both genuine experts in addiction medicine.

The PROMETA® protocol is the signature offering of PROMETA Centers™ Inc. medical practices, and it is having a profound impact on the lives of individuals dependent on alcohol, cocaine, and methamphetamines.

What to ExpectPROMETA treatment is generally performed in an outpatient setting, and typically requires just 3 visits* for the initial treatment, followed by one month of prescription medications and ongoing professional counseling.

The PROMETA treatment protocol includes:

- Initial treatment, which involves prescription medication and nutritional supplements administered in a physician-supervised setting.- One month of prescription medications and nutritional supplements following initial treatment.- Professional counseling following initial treatment, which typically includes individual and/or group therapy.

There are two PROMETA treatment protocols:

PROMETA for alcohol dependencePROMETA for stimulant dependence (cocaine or methamphetamines)

*Treatment for cocaine or methamphetamine dependence includes a second physician-supervised treatment of 2 visits on consecutive days, about 3 weeks after the initial treatment.

Clinical studies are underway to evaluate PROMETA and to confirm reports from physicians using PROMETA in their practices. Only a PROMETA treating physician can determine if PROMETA is appropriate for any individual patient. The medications used in the PROMETA treatment protocols are Food and Drug Administration (FDA) approved for uses other than treating dependence on alcohol, cocaine, or methamphetamine. Therefore, the risks and benefits of using those medications to treat dependence on those substances have not been evaluated by the FDA. Hythiam does not manufacture, distribute, or sell any medications, and has no relationship with any manufacturers or distributors of medications used in the PROMETA® protocols.

My response to the above e-mail:

That is excellent news. I work downtown near California and Kearny. Are you based at 1700 Montgomery Street? Would it be possible for us to meet? My phone number at work is xxx-xxxx.

My group will be starting in 2 weeks. I have 9 people signed up already and I haven't started to advertise to any extent.

I expect some of these people will need medical treatment. I know one woman is very, very ill.

I have a huge amount of experience having participated for the last year in an excellent online peer support group, paxilprogress.org. I have seen dozens of case histories. The good folks of paxilprogress.org also have some low-impact remedies that, through trial and error, have been qualified by the group's participants.

I have also read widely in the medical literature on antidepressant discontinuation syndrome.

Personally, I am 2 years along in recovery and while I still have some symptoms, I am not looking for medication. Withdrawal has made me hypersensitive to drugs -- which is not unusual in antidepressant withdrawal syndrome, it's known as the "kindling effect" -- as well as other symptoms of dysautonomia. Otherwise I am in fairly good health.

I would be thrilled if Dr. Smith would like to learn along with us about antidepressant withdrawal syndrome. This is an area that is almost uncharted territory.

Regards,

[altostrata]

[This Prometa protocol to get people off methamphetamine was highly controversial and Drs. Deutsch's and Smith's clinic closed sometime later. Dr. Deutsch, however, did recognize antidepressant withdrawal syndrome and said he saw it frequently among his clients, who were often on multiple drugs.]===============

altostrata 01-09-2007 08:14 AMRe: Peer support group starting in San Francisco

More excellent news.

I met again with my hosting agency director yesterday. After clearing permission for my group with his supervisors, who were very positive about the project, he now has the go-ahead to actually sponsor the group.

The group will take place on Sunday afternoons, 3-4:30pm, near the San Francisco Civic Center BART stop. If you'd like to attend, PM or e-mail me for the exact location. Eleven people have responded so far to my posting on craigslist.

I'm now officially under his wing, and until my non-profit incorporation comes through -- which could take years -- I can accept donations through his agency.

He believes this project could move up to the state level. In other words, I could become head of an agency supplying training etc. for similar support groups all over California. I have to think about giving up the big high-tech bucks.

When I initially contacted him, he said this idea was "big." I haven't the faintest idea how all this stuff works, so I asked him to be my mentor.

We discussed applying for grants etc., raising money, and promotion by going to county mental health meetings and talking to other agencies. He said I would need to raise money to fund going to conferences.

In other news, I'm meeting with the addiction medicine clinic people on Friday. They may want to start a group as well.

I'm just going one foot in front of the other right now. I'm having a bit of a relapse with low energy. Got to keep going.

===============

altostrata 01-14-2007 01:06 PMRe: Peer support group starting in San Francisco

We're going to have a reciprocal referral arrangement. I'm a little ambivalent about that, because his treatment will no doubt be very expensive.

He said if he sees enough antidepressant withdrawal patients, he'll create a "track" for antidepressant withdrawal, meaning a standard treatment protocol.

I've got to make a condition that he somehow disseminates any knowledge he acquires from my referrals, so it doesn't just stay with him as a money-maker and gets out to help the rest of the world. Maybe publishing a paper or two.

In other news, Google is holding up my ad because it contains pharmaceutical words and they need to review it to make sure I'm not some kind of unauthorized pharmacy or drug seller.

My first group meeting is next Sunday.

===============

altostrata 01-19-2007 08:10 PMRe: Peer support group starting in San Francisco

fyi here is the ad I finally managed to post on Google:

this is what you see if you are in the San Francisco-Oakland-San Jose area and you enter any of my 44 key phrases, such as "Effexor withdrawal":

DescriptionFREE peer support group for people experiencing withdrawal symptoms from antidepressants such as Paxil, Effexor, and Zoloft. This can happen while you are tapering off a medication or after you have stopped taking it. We will practice non-drug alternatives to control anxiety and help each other cope with symptoms. We do not provide medical advice, diagnosis, or treatment. The group will take place 3:00-4:30pm Sunday afternoons, very close to the Civic Center BART in downtown San Francisco. It is sponsored by a county-funded non-profit mental health clinic in operation more than 15 years. The group and clinic have no affiliation whatsoever with any religious or quasi-religious organization. Nothing will be sold to you. This is entirely on the level. There is NO CHARGE for participation. If you are interested, please send e-mail to xxxxxx@xxxxxxx.xxx. We will confirm date, place, and time. All responses are confidential.

Payment acceptedoptional tax-deductible donations===============

altostrata 01-22-2007 08:01 PMRe: Peer support group starting in San Francisco

Thanks, everyone. We were able at least to spread the fish oil gospel.

Babs and Healing being there made a huge difference for me. With the support of my friends, maybe I can keep on working on this thing. Thanks so much, B and H!!! and ducktail, elisa, eileen, scotty, homer -- everybody.

I am proud to say that I believe we made a positive difference in one attendee's life, who didn't know some of his troubling symptoms were from Paxil withdrawal, and will take much better care of himself now.

It was a beautiful day in San Francisco -- almost New York weather -- and I got several "sorry I didn't make it" e-mails later in the evening. I'm sure some folks were out getting some healthy vitamin D3 from the lovely sunshine.

It will be so interesting to see who shows up next Sunday. I have a good feeling about this, people!

===============

altostrata 02-11-2007 08:30 PMRe: Peer support group starting in San Francisco

It's going okay.

I took a big step and bought an ad to run in two local papers for the next two weeks. Let's see what happens.

I haven't felt quite ready to send out press releases, etc. and do some speaking, but that's coming next.

Since I'm starting to run up expenses, I'm going to talk to my sponsor and get advice about applying for a grant. He suggested I would want to go to conferences; I'll apply for money to cover that, too.

[i never did this; I had to go back to work.]

===============

altostrata 04-01-2007 10:59 PMRe: Peer support group starting in San Francisco

Update on the group:

Basically, the local craigslist groups section is the only place I've advertised that's getting results. The Google ad gets clicks but so far nobody has contacted me from it.

Over the last few months, every week or so somebody writes me asking about the group. Many express great gratitude that such a thing exists. I send out reminders every week to the mailing list. However, only a few people have attended in person.

It's probably really hard to actually meet with strangers about such a personal and agonizing experience.

I recently changed the meeting time from Sunday afternoon to Thursday evening. It looks like this is a better time. More people are saying they'll attend.

The people who have attended each has a heartbreaking story, much like the stories on paxilprogress.org. This is a real issue, affecting real people.

It's going slowly, but it's going. I believe the number on the mailing list is starting to reach critical mass. It might take a while before we have a sizable group of people meeting every week, but it will happen.

There is no question in my mind that this is needed, and it is doing good.

===============

altostrata 05-22-2007 11:47 AMRe: Peer support group starting in San Francisco

Just a note about how this is going --

People respond to my local San Francisco posting on craigslist. Their notes are heartbreaking, many people who have tried to get off their antidepressants, often Paxil, and failed because of the withdrawal syndrome.

One woman says she has delayed having a child because of this.

So far, few people are actually attending the meeting in person. Usually there's just me and one other person. But my mailing list is growing and every week or so somebody asks to be put on it.

Eventually, I'll figure out how to fund an ad in the local paper. So far only the posting on craigslist is producing results.===============

altostrata 07-06-2007 08:58 PMRe: Peer support group starting in San Francisco

I just wanted to note that my e-mail list is slowly growing, about one person a week answers the craigslist ad, and a few people have been showing up at each meeting lately. Several have said they will attend regularly.

So it took about 6 months for this to work with no advertising to speak of.

Next month, I'm going to take part in a mental health organization information fair for other non-governmental organizations, which is one of the ways to get the word out. The other NGOs may refer people to me.

I'm also planning to write an article for the NGO newsletter.

Slowly but surely, as much as my energy level will allow...

[i don't recall taking part in a mental health fair.]===============

altostrata 05-22-2007 08:58 PMRe: Peer support group starting in San Francisco

No, I think most are working. Few have actually quit.

I believe it's just not being able to find the time. When they need to, they will.

===============

altostrata 09-10-2007 07:08 PMRe: Peer support group starting in San Francisco

Yes, a few people come each week to the group. I do believe some are helped.

===============

altostrata 03-17-2008 12:02 PMRe: Peer support group starting in San Francisco

Although due to my own health problems I haven't been able to hold support group meetings since the end of November, I just got this inspiring note from a man who was one of the more faithful attendees. He is taking Paxil, has undesirable side effects, wants to get off it, but found it is very difficult for him to reduce the dosage.

I've been thinking of you and dropping you anote and a thank you for about a month now....Mainly I just wanted to thank you for the group thatyou created and the greater knowledge I have from havingbeen around you re getting off of meds.

I expect to be working more in the next future and havea number of alternative health approaches I want to investin that I learned from you.

I am still taking the vitamins which I began takingfrom information I learned from your research.

One of the best things I have continued with is myinvolvement with activities outside of my home, leaving myold isolation issues behind. I no doubt told you of a social worker\friend who gave me homework to 'get myself out of my isolation.' Icontinue to love the person I am now that I've sort offound my new extroverted lifestyle.

It's not that I don't still enjoy my time alone, in meditationand reading, etc. That time is still vital to me. It's justthat my life is so much richer now with people.

I hope your healing post meds is continuing to go well.

If you come across new info re withdrawing from meds Iwould love to hear about it.

All the best,

[name withheld]===============

altostrata 07-02-2010 04:14 PMRe: Peer support group starting in San Francisco

I had to stop the peer support group when I started working, and then I got very sick.

When I feel a bit better, I'm going to start up a group again in San Francisco. But I'm going to do it a bit differently.

What I found was that people wanted basic information on tapering. There was mostly a different bunch of people at each group. The few who kept on coming to the group needed therapeutic support beyond what I could give them. People need answers not only about how to cope with withdrawal symptoms but with their original symptoms of depression and anxiety.

So first, I'll do monthly presentations on tapering, and see who wants to join a group. I'll advertise the monthly presentations, and I have to find a meeting room. (My old sponsor's office is closed.)

Then I'll have a psychotherapist running a group as compensated group therapy. (I'll train the therapist in withdrawal issues first.) I need also to find doctors skilled in tapering to write prescriptions, etc.

People also wanted a Web site and online forum, so I have to set that up, too.

I also want to organize a patient advocacy group to go to regional meetings of psychotherapists, etc.

Psychotherapists are our natural allies in this fight.

===============

altostrata 07-03-2010 10:22 AMRe: Peer support group starting in San Francisco

Wow, groups everywhere would be great.

Thanks, whiteT. I might take you up on it.

[Responding to question about peer support among college students] ray, when you're ready to start, here are suggestions on what to say to the psychotherapy folks at school:

* Tell them about your experience.

* You're not going to encourage people to quit, just support them in tapering if they decide to quit. (THIS IS VERY IMPORTANT -- you don't want to interfere in anyone's medical care -- that could be illegal.)

* Young people in particular need encouragement not to risk going cold turkey, which is well-known to be harmful.

* Rate of taper is individual, some people may have to go slowly.

* Withdrawal symptoms can be very confusing and distressing and it helps people to understand others are feeling them, too. (They're "normal.")

* Psychotherapy can be recommended for students who feel they don't want to take drugs anymore but still need some help.===============

altostrata 09-12-2010 12:24 PMRe: Peer support group starting in San Francisco

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NearlyMedlessKate

NearlyMedlessKate

You are looking for support with anxiety as you come off Xanax? You might find some help in general anxiety support groups.

Yeah... anything. Are there such things as gen anx. support groups?

LOL.. check in your community. Maybe ask at the library. Often they are some variant of cognitive behavioral therapy.

Check Meetup in your area. There are Meetup groups (or at least there is one in my area) for people with general/social anxiety and phobia to get social contact without pressure. (I guess it's easier if you know everyone is terrified?) I'll bet many of them are familiar with benzos and at least some of them with their WD effects.

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Hibari

Hibari

i have found Alanon to be very helpful during wd. Since my over giving during the care taking of my mom contributed to my collapse, and subsequent depression after her death, learning how to take care of myself in Alanon has been very healing. I don't share all the time about my wd but when I do, I connect it to the spirit of Alanon in how it encourages self-care. I also have found that people have been very supportive and compassionate when I do share about WD. I only share in meetings where I feel safe enough to do so and have discovered over time are accepting.

I attended a few meetings in NY but was getting more out of Alanon at the time and did not have the energy to attend both. I don't know enough about Emotions Anonymous but some of the people attending the meetings shared that they found it helpful. I am only offering it as a resource to be explored and not as a suggestion or recommendation to anyone.

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Henosis

Henosis

Afraid not, not personally.You can go to AA though and say you've got a medical problem and a desire to stop drinking and using addictive medication. I know a benzo dependent person who attended AA for support, though he felt nothing in common with the addicts and stopped the experiment quickly. But, feel free to try it.It would be wonderful if a proper support infrastructure existed.

Just wanted to add that I attend AA for previous painkiller addiction, and my friends there have been the most helpful people I've met dealing with my SSRI nightmare.. Mostly just because they've dealt with withdrawal and post-acute withdrawal syndrome from opiates/benzos/alcohol and the experience can be very similar. Also they are very used to crazy **** ???? And psych med use abounds..

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Henosis

Henosis

I'm not sure that such a group would have been do-able for me or a lot of other people because of the symptoms in early withdrawal - light and noise sensitivity, insomnia, et cetera. I was just not inclined to go out in public any more than necessary to get essentials. Sitting at the computer, often reading for hours and occasionally posting was about all I could handle in the first three to four months of withdrawal.Medically speaking, the withdrawal symptoms from antidepressants and other prescription drugs may have similarities to withdrawal from illegal drugs and alcohol, but I think the resemblance ends there. The reasons people end up in these two types of withdrawal are very different and I don't think the twelve-step approach would be very useful in AD withdrawal. Most people have no idea what they're getting into when taking prescription drugs, whereas the dangers of illegal drugs and excessive drinking are well known.

Twelve steps themselves no, but the relationships developed in AA can be very beneficial with dealing with difficult emotional/mental conditions like psych drug withdrawal. It's much easier to discuss with my friends from AA than my normal friends as they are used to dealing with crazy **** and drug withdrawal lol

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rafatennis

rafatennis

Hi Samanthaelizabeth, I hear your frustration and loneliness, I just posted this morning that I would really like to connect on this forum with individuals as a true support group as there seem to be none out there that understand that we are not drug abusers, we are victims of prescribing doctors who told us our brains needed these toxic drugs and never said a word about the difficulty in getting off these meds. i currently am tapering a Tricyclic Nortriptylene and once completed will take on tapering clonazepam after the Nort is complete, I'm following this forums guidelines and have hit rough spots along the way. I've attended 12 step groups but find that few understand or won't admit that they are battling with pych meds themselves, so feel free to respond, I have spent alot of time in research as many of us have and am convinced that we must work our way to health without these neurotoxins.

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Altostrata

Altostrata

If I had the time and energy to do this again, I think a lecture format might be a better way to reach people. It's hard for strangers to show up consistently and talk about going off drugs. It takes time to build rapport for mutual support.

I would give periodic presentations about tapering, take e-mail addresses, and form a group out of that to lobby and educate local mental health organizations. This empowers people to taper and gives them a reason to get together and build relationships.

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Kilimanjaro

Kilimanjaro

Does anyone know if there are in-person support groups in the Los Angeles area for people dealing with antidepressant withdrawal? If not, has anyone started a support group in their area? And if so, how did they go about doing it?